Tag Archive | disability

Owning It – A step past acceptance

dancing-2081158_1920.jpg

I always say when you are open, the universe speaks to you. I am hearing one message loud and clear being repeated from multiple sources. It’s starting to sink in and take hold and I hope I can explain this clearly.

I’ve always had something to struggle against. An illness, a disease, a deformity, a disorder.  I’ve always accepted each one as it is diagnosed as a new part of me to struggle with, fight with – and HIDE!! I was taught to be normal, above all costs. Never let anyone know you are suffering. Never let anyone know you are different. Never let anyone know you need help. It is shameful, horrible, disgusting. It is whining, weak, pitiful. No one will want to listen or be in the room with you. No one will accept you with all of your flaws. You must only present a perfect version of yourself, like an edited photograph representing you instead of your real you.

No one can see you in a wheelchair, a brace, a bandage, a pimple, a scar, if you’ve gained a pound, if your nose is red from a cold. No one can see your pain or fear or confusion.

I followed those rules most of life, somehow I actually did. I hid my disabilities like a good girl. I know I shared my difficulty with having to use a can a year ago, in public. It took everything in me to show people I needed that, something so visibly wrong with me, and of course the comments came, “you’re too young to need a cane…” remember that?

OK, so my doctors are now recommending that I get special tinted lenses in my glasses, and special earplugs. The idea here is that my migraines are caused by overactivity, overexcitability, too much stimulation of neurons and these aids can help reduce sensory input, reducing triggers and sensory overload, meltdown and confusion. Makes sense, I struggle when shopping in bright lights or surrounded in a noisy crowd.

But my first thought was, hell no, I don’t want to look like a freak. What if people notice? What if they ask me about my weirdo glasses? Can I handle that?

I’m working with this one major stuck point still as it runs deeply and is multifaceted, this feeling of being a freak and needing to hide flaws. It is a core belief, reinforced by my entire family, and sadly, by most of my adult relationships as well. People do not often respond positively to people with special needs. But that doesn’t mean I should be afraid to have special needs. I started to accept that I do – but can I own it?

Here’s the difference. And wait for it, it was explained to me by my MIL!!! I was telling her about these lenses, and tentatively expressed my fear of wearing glasses that would make me stand out. The ones I need are likely a deep rusty rose color (and yes I’ve already explored all of the implications that my doctor is literally prescribing rose colored glasses, so, umm, anyway) and would be quite obvious. I asked MIL, what if people ask me, why are your glasses pink? She said “Tell them you like pink. Get some other pink things, a pink hat, flower, bow, necklace, color your hair pink. Own it. If they want to look let them look. If they want to ask, let them ask, Who cares what they think. If these glasses help you feel better…that’s all that matters, you are all that matters, not them. Just own it. Be someone who wears pink. why not”

I actually cried. My mind was blown. I have never heard such a message of acceptance in my entire life. And to come from someone that is closest to my mother figure, well, it has broken something in me. I needed someone’s permission I think, and she gave it to me. I can be weird. I can like pink. I look different. why not. who cares what they think?

Can I do that? Can I stop hiding? Can I own it? Oh my god I don’t know but I know I want to. Can I be the girl that doesn’t care what I look like when I dance in the rain, all alone? Just be her, own that feeling I get when I’m hiking and carry it with me everywhere? How do I start? I just start. I stop hiding.

I say hello world. This is me. I am not apologizing any more.

OH!

I forgot to add the other message I received from the universe. I was listening to music this morning, and put on Colbie Caillat to see what I got in the youtube mix. She always makes me happy. First song that came on was “Try” and I wasn’t writing yet, so I watched the video, with all these beautiful, unique women, and woah did this message hit me hard. Tears were unstoppable. This is exactly what I needed to hear coming from one of my favorite singers too. So simple – yet beyond powerful. I think I’ve heard the song before, but never absorbed it like today.

You don’t have to try so hard. to belong. Do they like you? you don’t have to bend until you break. you just have to get up. look in the mirror, at yourself. Do you like you? I like You.

Here’s the entire song:

Put your make-up on
Get your nails done
Curl your hair
Run the extra mile
Keep it slim so they like you, do they like you?

Get your sexy on
Don’t be shy, girl
Take it off
This is what you want, to belong, so they like you
Do you like you?

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Mm, mm

Get your shopping on, at the mall, max your credit cards
You don’t have to choose, buy it all, so they like you
Do they like you?

Wait a second,
Why, should you care, what they think of you
When you’re all alone, by yourself, do you like you?
Do you like you?

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try so hard
You don’t have to bend until you break
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Mm, mm

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Take your make-up off
Let your hair down
Take a breath
Look into the mirror, at yourself
Don’t you like you?
‘Cause I like you

Advertisements

What am I Worth..to an Employer?

keyboard-417090_1920.jpg

Finding a job is pretty darn high up there on the life stressors chart for anyone. So many decisions, so much time, effort. Penetrating questions. Potential adjustments. Fears. Hopes. Disappointments. The waiting. The unknown. What am I worth?

My heart rate is up just typing that.

So think about my situation for a moment. I had a certain skill set, loads of high tech and higher math knowledge, computer software, great vocabulary, fast typing, persuasive speaking and writing, super confident.

And now…I look at my resume and it feels like someone else. I have so many holes in my memory, no one would believe I used to code webpages or teach calculus or write poetry. My typing has gone from about 80 wpm to 35 wpm with so many errors, the screen is all red underlines. Words that used to flow freely get stuck and I sit and stare, waiting for a thought to form. I am relearning math, but I doubt I will have time to get back to a calculus level in my lifetime as I’m relearning basic facts. Here and there I remember things, like how a tangent works, or what an exponent does, but then I start to work it out and it goes blank again. My daughter is in  high school algebra right now, I had been looking forward to coaching her, and it all looks so familiar, but I have no idea how to solve any of it. I tell her, you have to do something with regrouping….and I get excited thinking I might recall, but no, I can’t get any further.

So. How do you get back to work, when you can’t do what you used to do? How do you explain that you can’t do what you used to do and not sound incompetent or insane?

This process has not been going well. I’ve been applying for low level part time jobs that have nothing to do with my work history. I either don’t get called at all, or when they talk to me, they say I am overqualified, they are afraid I will get bored, or just give me that certain doubtful look, or have that tone in their voice and I know it is over.

My doctor recommended I contact my state workers with disabilities board. I guess I knew there was one, because they helped my brother, but I never considered myself disabled…just never thought of it. So after the shock wore off, I looked online, and saw they had exactly the services I need. I applied online, they called me the next day, set up an intake appointment that same week. Wow!

So I met with them last week. I was so incredibly nervous. I had to gather up my medical records to prove my eligibility, that is phase one. I worked through shame, fear, felt like I was whining, complaining, oh poor me-ing. Until I got there. It was literally a life changing day.

I’m sitting in the waiting room and my assigned case worker calls my name – she is completely blind. She has a service dog leading her, and me, to a small conference room. We sit down, and I’m instantly much more fascinated by her than I care about me anymore. She is confident and professional. She has a stack of folders labeled with braille, and braille typewriter thingy I’ve never seen before to take notes as I talk. She hands me papers that she can’t see but describes them to me in detail. It blows my mind as she helps me to fill them out.

She asks about the forms and records I brought, and asked if I would give her a summary, since she could not scan through them. As I start describing my lengthy and complicated neurological issues, I could sense compassion in her, as I have for her. Mutual respect was huge in this room – like we were both thinking “Damn, I don’t want to be her…” I could tell she wanted to see me when I talked about my scoliosis, because you might think I am visibly deformed, but luckily my curves are balanced and my surgeons are talented so no one would ever know by simply looking at me. You can see my limp when I walk though. So I’m thinking she was not always blind, the way she looked directly towards things and me.

We had a few of these surreal shared moments. I liked her very much. She explained the program and seemed excited to have me there, that she can actually help me. She said so many come through and disappear, don’t show up again, aren’t willing to work hard, don’t answer phone calls. She said she can tell that I work hard from my past jobs, and that I keep my doctor appointments in the city. I never thought of that as a major accomplishment…but I see her point. That takes planning and commitment, shows responsibility to drive 2 hours away for my neurologists and surgeons.

So, the next step is I wait for them to confirm my medical eligibility, then they will set up vocational skill assessment. I’m guessing typing, reading, math, but I’m not sure what all is involved there. Then they use that to see if I nee training, find some job leads, help me re-write a resume, practice mock interviews so I don’t stumble with those tough questions. They can advocate for me, or work entirely behind the scenes, meaning my employer can know I’m using disabled services or not, we will decide which way is best in the career plan we develop. They will stay with me once I’m hired, make sure the transition is smooth. Then I get to use them again, say if I want progress in my career or my health improves, I’m not stuck. They want me to be challenged and working meaningfully. Wow.

So my nerves are gone and I’m only excited now. Someone on my side to help me navigate these tricky steps to getting back on my feet. I am so grateful.

Accept or Fight

karate-2578819_1920.jpg

When another doctor tells you that what you want is not possible and you need to accept that and set more realistic goals for yourself, do you do it or do you keep fighting for what you want?

I have seen a team of neurologists and neuropsychologists now.  They are all singing a similar tune. That I am different. That I have to accept that I cannot return to the previous version of me that I recall before the brain injuries. (I’m not sure if I have discussed the extent of my brain injuries here, I haven’t wanted to talk much about it and writing was so difficult before. But I have some serious cognitive dysfunction, memory gaps, processing delays, visual lags and disturbances, sensory overload….it goes on.) That skills like creativity, and certain personality changes, once altered, do not heal and come back, at least not identical to what they once were. I may be able to enhance what I have, but I will never be who I used to be.

I may never be able to do what I used to do.

Every time I think of this as a fleeting thought, the tears return.

Another esteemed doctor told me this again yesterday. They are well educated, at a great hospital, known for their expertise, and my gut trusts them. However, there is also something in me that is screaming they are wrong. Doctors once told me I may never walk again, that my weakened leg would never regain muscle tone. Well look who is out there attempting to jog. So I don’t accept “never” as a final diagnosis. I feel like I’m still in here, just slowed down.

He recommended I either apply for disability or try to work with a vocational counselor, but he doesn’t think I can keep up with the pace and demands of a job. That was harsh, but possibly true. I may be overestimating my stamina at this point because I want to be better.

He said that I am still traumatized, understandably, and that for me, the trauma never stopped. 40 years of trauma. He said that would be enough to break anyone. But add all my medical issues and it was like adding gasoline to a fire. And then on top of that, a stressful marital relationship, he says it was a cascade of events and none of them were good for brain health.

We talked about my social support network, and I said I’m all alone, completely. I have a few online friends and my counselor. We talked about how I isolate myself and why. I told him about how I have low tolerance for people, no matter how much I try, I can’t enjoy being with them, or think they aren’t good people when they make fun of others, are greedy, I catch them lying or cheating, etc. I said I try to turn down my moral standards but I can’t. He said something I never heard before. He said of course you can’t. You have never felt safe in your life. As soon as someone says or does something that makes them have any possibility of being a bad person, you go into self protection mode and either stop talking, leave the room, or hide or whichever other skills you have learned to avoid conflict and being noticed. This is to keep yourself safe. It makes perfect sense and is your core belief stronger than all others. Safety comes first.

My jaw dropped, and I felt angry a bit, kind of embarrassed, and I wanted to say he was wrong, to fight that, but as it sunk in, and so many social interactions spanning 40 years flashed across my mind. Holy crap. He is right.

Here I was thinking I was over my trauma and it didn’t matter any more. That I was an introvert and yeah maybe I was wired differently, or maybe on the aspberger spectrum, or maybe just get annoyed with small talk and petty people. But no. Every social decision ever has come down to safety.

He said the right trauma based psychologist may be able to assist me with that component and he would help me to locate one near me to work with. He said I can’t live the rest of my life alone, or I will continue to deterioriate.

I don’t know. I feel like I’ve tried. I feel like the people that accepted me never accepted the real me and when I do reveal the real me people run for the hills, unable to handle me. So maybe someone can help me find this tightrope skill of balance of how to build a relationship that I feel safe in, connected to the other person in a real way, without overwhelming the other person with my intensity.

I think figuring that out will help me in any job I may come to have in the future, whether I go through the disabled workers board or get one on my own.

I do know that I want to be a part of the world and connected to people, to good genuine people, and I just don’t know how.

I do know I’m not ready to give up and get on disability and never work again. I think I still have something to offer. I’m still smart in some ways, just really slow, and get tired out quickly. I’m hopeful the new migraine meds will start helping with some of that too. I’m hopeful that my family is done adding trauma to my life and I can finally move ahead on my own. My parents are gone, my brothers aren’t speaking to me. The hole hurts, but an empty hole is a dull ache, not like the tortuous pain of constant flaming daggers tossed at you.